Lea Kilenga
Making Sickle Cell Disease a global health priority while ensuring treatment is accessible to all patients
KENYA
Growing up in rural Kenya, Lea was one of three siblings in her family who had been diagnosed with sickle cell disease at an early age. This genetic blood condition causes red blood cells to take on a crescent shape, leading to blood clots, severe pain and chronic anaemia.
When left untreated, sickle cell disease can lead to organ damage, disability and death. It predominantly affects individuals of African or Caribbean heritage and, in Kenya alone, it is estimated 14,000 children are born with the condition every year. Sadly, most children with the severe form of the disease do not survive past the age of five, and tragically, Lea's own sister died.
Lea's advocacy journey began when she encountered the harsh reality of the social stigma associated with her condition when a new boy at her school discouraged other children from sitting next to her. She recalls her efforts to appear "normal," taking daily medication, frequent doctor visits, and routine blood transfusions, believing these were part of every child's life. But it was that moment when the new boy branded her "peculiar and contagious" due to her visible symptoms – including jaundice, a distended stomach, and a slender frame – that shattered the illusion. Many of her classmates fell for this harmful narrative, resulting in Lea's isolation as she stopped attending school for three long months.
The emotional scars from this experience took a toll on her self-esteem, pushing her into a period of self-destructive behaviour that led to multiple hospital admissions for alcohol and drug overdoses. However, her determination to overcome these challenges led her to a turning point during her university years, when she began her journey as an advocate for Kenyans living with sickle cell disease.
Lea’s work commenced with a photography project aimed at demonstrating the significant number of people affected by the disease. She captured the stories of 400 individuals, both patients and caregivers, revealing the silent suffering that accompanied the disease, often concealed due to the fear of stigma.
Raising awareness of sickle cell disease in remote Kenya.
Half of the individuals Lea encountered lacked access to adequate pain medication, despite their high levels of pain. The drug hydroxyurea, used to prevent sickle-shaped blood cells, was approved for treatment in Kenya but remained unaffordable to most people. She discovered that only 5% of the people she documented had consulted a health professional, and many had received multiple misdiagnoses. She also uncovered that many people, especially those in rural areas, resorted to self-medication with herbs and traditional remedies due to limited access to proper sickle cell care.
Lea’s eye-opening findings contributed to the establishment of national sickle cell disease care guidelines in Kenya. Lea is a recognised Sickle Cell Champion in Kenya and has received an award from Kenya’s president H. E Uhuru Kenyatta, for improving sickle cell care in Kenya. And in 2017, she founded the Africa Sickle Cell Organization (ASCO) with the mission of raising awareness and improving care for patients in resource-poor, high-burden areas.
Lea's dedicated mission, through the ASCO, is to alleviate the burden of sickle cell disease in Kenya, particularly in the most impoverished regions. She is collaborating closely with hospitals and medical service providers in the most underserved areas to ensure that every sickle cell patient receives a formal diagnosis, affords care through Kenya's National Health Insurance Fund, and gains access to vital medication and pain relief for symptom management.
More globally, Lea’s vision is to transform sickle cell disease into a global health priority and eradicate the stigma associated with it. She envisions a future where people with sickle cell disease – anywhere in the world – can lead fulfilling lives, free from isolation and prejudice. To achieve this, Lea currently sits on the World SCD Coalition steering committee and WHO Hemoglobinopathy Guideline Development sub-Group. She actively collaborates with local/regional and global governments, CSO’s and health partners to advance care for sickle cell patients.
Lea emphasises that individuals with the disease must be the drivers of change. Her message is clear: "There's no saviour coming. We must make this change for ourselves and others like us."
Educating and informing families of people living with sickle cell disease.
Making sure every patient knows how to access medicine and treatment.
Make a donation for Lea to put where it’s needed most or check out her latest projects below.
Contact jo@justpeoples.org to learn more about how you can support Lea’s work.